@Baobab

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Baobab

Lemtrada- apparently the best in UK?

but what is it? (as Cat would say) I noticed US-Emma (I would tag but not sure how! sorry) in a different conversation stated that Lemtrada and one other medication are offered in the Uk for early cases and it's the best available. I am in the UK and have not been offered these, I am due to start Rebif. Am I missing out on a better medication or is Lemtrada for specific cases? Is anyone else on Rebif here?

Baobab

@Baobab

I've just read the replies to an earlier conversation about Lemtrada, strange that my nurse or neuro never even mentioned it, when she's back from her holiday I may ask about it, in the meantime I hope they finally sort my rebif medication.

Stumbler

@Stumbler

@Baobab , Lemtrada has only just been approved for use in the UK. And, unfortunately, the NHS aren't going to go out of their way to offer a more expensive treatment. But, have a read of this:- http://multiple-sclerosis-research.blogspot.co.uk/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html

US-Emma

@US-Emma

If it is a matter of days to weeks to speak to an MS nurse about Lemtrada as an option I would recommend not starting Rebif & asking. If this conversation would not take place for 6+ months start something. I don't know your NHS system well enough to know how it works & how best to advocate for yourself. Here it is all about advocating for yourself & educating yourself. I don't think it is as easy in the UK. I hope this is helpful. Emma

Baobab

@Baobab

It's really interesting and complicated stuff, my Rebif starts next Thursday and my MS nurse is on holiday so I doubt I'll get info in time. I can't see myself delaying the rebif, I feel like I've had to wait a torturous amount of time for it to start. I've had a brief look at that link, thanks Stumbler, most of it just goes over my head at the moment, I just can't seem to take anything in.

katfight

@katfight

@baobab to tag someone you just need to put an @ in front of there name like I have with yours @baobab u ate then notified on here / email x

Missytiggy

@Missytiggy

Hey, just a quick one to say I have recently started Rebif too. I was offered quite a range, but not Lemtrada. I'm under the QE Birmingham and I don't think they're viewing Lemtrada as a first line treatment. I asked my nurse about it and she said she would never recommend it for someone in my position (early MS, young-ish, potentially planning a family in future) because it's quite aggressive, they don't know the long term effects and could potentially do more harm than good. I think there's quite a few people here on Rebif. I've been on it five weeks now and it's going ok. Feel free to message me if you want to chat more about that. Good luck with getting started!

Graham100

@Graham100

How have you been feeling while waiting for rebif? I waited 4 months to start, that was January. 5 weeks ago I stopped because I am lots worse not starting isn't going to make much difference, wish I could go back to jan, not start it and see how I feel now, MS nurse said at time,, you know this isn't going to make you feel any better, only stop more relapses?? (NOT). Your call, and I know you will start, I would have back then,, I never took advice from parents when I was younger either, oh dear when I look back now, sorry dad. Lol

Baobab

@Baobab

I have heard back from my MS nurse and she like @MissyTiggy said I would not be legible for it, they are keeping it for more severe cases. Also it's not available at my hospital, I'd have to switch to one further afield (very doable). I'm keeping my fingers crossed for Rebif to work, if not I'm tempted to swap to the weekly jab.

Graham100

@Graham100

Good luck, you will probably find that your not eligible until you have been on something else, cheaper!! If truth is told. In 9 months time and other stuff didn't work, then you can try the good stuff,, so lucky we have the NHS,, NO Actually we are lucky,, lol

US-Emma

@US-Emma

@baobab Stumbler provided this link and information that compares Lemtrada and Refif head to head: "The CARE-MS 1 trial compared Lemtrada with Rebif in people with relapsing remitting MS who had previously not taken any disease modifying drug for their MS. People taking Lemtrada were around 55 per cent less likely to experience a relapse over the course of two years." So compared to Rebif, Lemtrada is 55% more effectve, it goes on: "Results from a long-term follow up study of people taking Lemtrada have shown that the majority of people on the treatment experienced an overall improvement or stabilisation in disability over seven years. This study is the first to report longer term results of the drug" Source: http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada

US-Emma

@US-Emma

@missytiggy None of the DMTs are safe during pregnancy. Lemtrada would be the possible exception because it is given over 5 days and then nothing is given for 12 months. It clears your system quickly (matter of about 7 days) so there is no drug in your system to affect the baby while you are attempting to become pregnant. Excepts from MS Research Blog out of London: "Which is the safest drug to take during pregnancy? The answer is none. None of the current DMTs have a license to be used during pregnancy." "What would I do? If was deciding on which treatment to start and was planning to have children in the future, I would consider alemtuzumab (chemical name for Lemtrada)." Source: http://multiple-sclerosis-research.blogspot.com/2014/09/clinicspeak-pregnancy-outcomes-with.html

US-Emma

@US-Emma

Here is Professor Giovannoni from the MS Research Blog in London on treatment choices with two patients: "Things have changed, we now have alemtuzumab (Lemtrada) as a therapeutic option for these patients." "When I mentioned the rates of long-term remission on alemtuzumab (Lemtrada), and the potential an induction therapy offers regarding a cure, things got messy. I now realise that I can't mention the C-word without defining it. When I tried to define the C-word and discussed the potential of a cure, both patients were lost. Despite this it was clear that a potential cure is the alemtuzumab (Lemtrada) trump card. The promise of long-term remission, and a potential cure, is what outweighs the risks of being treated with alemtuzumab (Lemtrada)." Source: http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html If highly effective, possibly curative, treatment is available, why not choose it. Lemtrada is approved for newly diagnosed patients and specifically is NOT as effective the longer you have MS. If you dont act early in the disease this option will not be open to you later. If you would like the citing to this data it is here: Source: http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-when-to-say-no-to.html

US-Emma

@US-Emma

Information on the availability of Lemtrada (alemtuzumab), provided by Stumbler: Who is eligible for Lemtrada? Both the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) have issued their final guidance on Lemtrada. They have recommended that Lemtrada be prescribed on the NHS in England, Wales and Scotland for adults with active relapsing remitting MS. ‘Active’ is usually defined as two relapses in the previous two years. From September 2014, hospitals and NHS Trusts in England and Wales will have to prescribe Lemtrada to all people who are eligible for it and who choose to take it. While in Scotland the NHS does not have the same legal obligation, there is a clear expectation on Health Boards to make SMC-recommended treatments available. Decisions about whether Lemtrada will be available in Northern Ireland are expected later in 2014. Source: http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada There will be a tendency for doctors to NOT prescribe Lemtrada because it is more costly initially (over doing nothing, or a less effective drug) but Professor Giovannoni of Barts argues that it is actually MORE economical for the NHS system over time because you will need less services like physical therapy, wheelchairs and other assistance, which cost more to the state over your life. The Great News inherent in this argument is very personal for you (while it is nice to save the state money over time) you WONT NEED HANDICAP ASSISTANCE or it will come at a much later stage in your life if you are treated early with Lemtrada. Mobility and saving Brain Function are much more important to me as an MS patient. I also like the idea of taking 8 days of medicine for a treatment that has been shown effective for up to 8 years (this is as much data as we have- it could very well be longer) 8 days- vs daily, weekly shots or daily pills, or the very worse, doing nothing. Im moving 'on' from MS and an MS identity with Lemtrada treatment. I just wish I had the opportunity to take Lemtrada 10 years ago within one of the clinical trails at the time I was diagnosed. Regrets put things in perspective but are hardly useful after that... Take care, Emma

snowbeetle101

@snowbeetle101

Does anyone know if they are doing Lemtrada at Kings Hospital in south London? I'll be likely going to Charing Cross, however just moved house and changing to Kings and Silber could be a lot easier.... does anyone know if they are very experienced there? Thanks all - be well!

TracyD

@TracyD

@snowbeetle101 I believe they are doing Lemtrada at Kings College (if that's the same one) Charing Cross definitely are and have a lot of experience. I believe they also do both day patient and admission. Personally I'd go with the more experienced facility even if it's not quite so convenient as an admission if I was still in that position. That said I was the 2nd / 3rd patient at Southampton with a Genzyme person on site supervising the treatment and the care was great

Traceylou

@Traceylou

I am Currently 2 weeks post 1st lemtrada infusion, to answer the 1st question lemtrada is a form of chemptherapy was used under the name Campath to treat cancer of the blood and bone marrow. Lemtrada wipes out your lymphocytes meaning you have no immune system for a period of time and the hope is it regrows nice and healthy. The reason lemtrada is not offered to everyone is not only due to the cost as many people believe but due to the risks involved, each person will be evaluated to see wether the risk of getting the drug outweighs the current progression of their disease so the drug tends to be offered to people that are highly active RRMS and currently not responding to any other line of treatment. Lemtrada and pregnancy: you can not start trying for a baby until at least 4 months after the 1st transfusion but personally as lemtrada is a long term commitment i would refrain from even trying until after year 2 as if you were to get pregnant after 1st transfusion this would delay the 2nd year treatment as you can't receive if you are pregnant. i am aware that copaxone is a safe DMD to take if trying for a family. lemtrada has also appeared in breast milk so the whole its out of your system is false lol There is many serious and life threatening risks associated with lemtrada as there is with other drugs available. blood tests are taken once a month for 5 years after 1st transfusion. https://www.lemtrada.com/ this is a link to the lemtrada site which outlines the risks etc associated with the drug.

Robaczek1

@Robaczek1

Im thinking to sart lamtrada soon but im not to sure help me p☺☺☺??lz

TracyD

@TracyD

@traceylou One correction to your post Lemtrada does NOT wipe your whole immune system. It is a targeted treatment which binds on to the T & B Cells only and bursts them. They are flushed out of your system along with the Lemtrada drug within 4 weeks of the treatment completion. The majority of the immune system stays in tact and functions normally though out the two years of time that it takes your body to repopulate the T & B Cell stocks twice within your body - Hopefully without the MS tendency to use your Central Nervous System as food :-)

Traceylou

@Traceylou

Yeah Tracy you are 100% right i should of maybe worded it in another way alot of people do not know the functions of T and B cells and therefore i was trying to put across your immune system is wiped of these which are the cells that fight infections so after lemtrada you are at risk of infections and obviously other nasties etc more so than the other treatments available here in the UK. on another note i have never been so excited about a blood test in all my life to see how the little fella's are doing lol i find myself wanting a microscope to be able to watch as it happens (i'm sad i know) lol

Margarita

@Margarita

@snowbeetle101 I've just been referred to Kings for Lemtrada, can't offer any details/actual experience yet, but they're definitely doing it. Also wanted to mention that it's not necessarily only for those whose MS is highly active - I don't fit that description, but after doing some research, I decided that early, aggressive treatment made sense. My neurologist agreed that was reasonable and agreed that Lemtrada was a good fit given my plans to start a family soon. Who knew "do your homework" would be such important lifelong advice!

TracyD

@TracyD

@traceylou I know just what you mean about the bloods, my 5th lot are being taken next Friday (along with a Flu jab (not live virus apparently) which we are eligible to have because of the MS and the treatment) I have a very whizzy spreadsheet which is uploaded to the UK and Worldwide Facebook groups for Lemtrada which tracks my baseline (before Lem) the upper and lower limits for each measurement and month on month every result I get (in both landscape and portrait formats - yes I really am THAT sad :-(...) It's sort of being used around the world now its been downloaded so many times If you want a copy drop me a line and I'll send it to you :-) Month on Month I look at my lymphocytes and hear 'It's coming up, It's coming up, It's dare' :-) xx

Traceylou

@Traceylou

I have my 1st lot on 28th this month, will b interesting as my bloods were a little iffy b4 infusion as my platelet count was low (75) but we went on ahead as i felt fine! yeah flu jab is not live vaccine when injected the 1 that they put up the nose is live (mainly kids get that 1) i have my daughter being injected rather than having the up your nose one this year on advice from my Neuro, also been told prob not worth while getting flu jab as flu season will be over by the time my system has enough for it to bind to lol so just lots of avoidance of any1 that looks like they may have runny nose, coughing or germ filled and antibac hand gel everywhere i go lol. You know any1 that lives with you is also entitled to get the flu jab also, my son and husband are both getting it this year, just help minimise the risk of them getting it and infecting me lol. i have been reading you blog before and after i received lemtrada and it's very useful. do you mind me asking how long before you stopped getting itchy lol i will be 2 weeks post infusion this Friday and still taking piriton as i seem to get itchies and then hives appear! if any1 was watching me they would think i was flea infested lol

TracyD

@TracyD

@traceylou It took about 3 weeks for the itchies to finally calm down for me. They'd come and it would be my hands and forearms that I quite happily wanted to flay the skin off. In the end I just took an anti histamine every day around lunch time for about 3 weeks itchies or not until one day I forgot and the itchies didn't happen so I stopped taking them and it didn't happen again :-) It really does give a new perspective on why the curse : 'May the fleas of a thousand camels infest your crotch and your arms be too short to scratch' Is such a terrible thing to wish on someone doesn't it :-) xxx

Traceylou

@Traceylou

lol those words went through my mind on the last day of infusion and i totally got what u meant! i looked like i had rolled in a field of nettles and also been attacked by a swarm of bees just for good measure!! I also had nurses saying it was the worst rash they had seen yet to which i promptly told them to hush as i wanted to get home lol i think i will start taking the anti histamines daily now as i am waiting till i itch or the hives appear before taking so makes sense to take in the afternoon to stop them from coming. Thanks :)

Monica2015

@Monica2015

Hi ladies and gents, I'm a newbie on the site. Starting Lemtrada on the 19th Oct ( managed to bring date forward and now a tad unprepared!). Annoyed have any words of wisdom of what to expect, how to prepare/ minimise sure effects please? Also, any idea as to how long the recovery period generally takes before feeling vaguely human again? Many thanks, Monica

TracyD

@TracyD

@Monica2015 Swiped from my other posts .... 3 litres of water a day - every day. During treatment I took in the bottles so that I could keep track of what I was drinking rather than the jugs and daft little cups they give you at the centre. It takes a few weeks to get used to the volume so start well before you go in or you discover you have a bladder the size of a peanut when you need one the size of Belgium if you don't allow your body to get used to it you'll be taking your drip for a walk to the bathroom every 15-20 minutes - You also need to keep the water volumes up for several weeks at least after the treatment Mints to get rid of the steroid taste in the mouth. A water bottle so you can measure that she gets the 3 litres of water a day required to flush the dead T & B cells before, during and after the treatment. Electronics / books etc to pass the time at the infusion centre. Something to munch on - Steroids can give the munchies - personally I'm a savoury girl and mini cheddars were consumed in vast quantities. Anti itch cream for the rash in case it comes, anti histamine again for the rash - you might need this in the evenings etc, but tell the infusion centre what has been taken - same with Paracetamol - first few days I had a spike in the head like headache - tell the centre what's being taken. Something warm for the feet - sitting there for ages made my feet really cold :-)

Monica2015

@Monica2015

Thank you Tracy! Read your entire blog in antipation, very helpful! Can you detail the campath diet pls as not received any info from MS nurse? Thanks, Monica

Traceylou

@Traceylou

to echo Tracy water is a must before and after. My treatment was infused in a neurology ward as an impatient for 5 nights, i was admitted the evening before i was due to start infusion i had all drugs prescribed by the hospital so anything i brought in was sent home again. I took my tablet and have sky.go installed on it so i could watch TV and downloaded movies to watch to pass the time, i found i did not have the concentration for the puzzle books i brought lol i needed more pjs than i anticipated due to my temp spiking after infusions and causing me to sweat alot so hubby brought more in for me. As to feeling normal after everyone is different and everyone will feel different which was even observed with the other girls that were in at same time as me getting infused. I personally had no major complaints, was tired for the 1st couple of days after getting home but i think the fact our bloods were not taken until after 12am so they could b processed for same day as infusion and i had been stabbed with so many cannulas my veins went into hiding so i had to wait on night team coming to do mine meant i only got on average 4/5 hours of sleep per night even with a sleeping tablet so i slept most of the weekend on getting home. i am now 1 week and 5 days post transfusion and can't say i am experiencing anything out of the norm, still have my usual daily MS things etc, only think different is the damn itching lol but now started taking the anti histamines to curb it from getting that i want to claw my skin off. Tracys blog is really useful to read. i hope it all goes well and is not to bad an experience for you.

Monica2015

@Monica2015

Thank you Tracylou, v helpful! Not great with water due to bladder issue fear, but will do so in any event! So take no drugs in inc antihistamines or sleeping tabs? Thanks, M

Monica2015

@Monica2015

Traceylou, Do you feel exactly the same then? No improvements noticed in symptoms?

Traceylou

@Traceylou

i took whatever drugs i was prescribed and because i was on a ward they told me to send them home as they would write me up for anything that was needed, u get an antihistamine each day as standard via IV before the infusion and you only need to ask for sleeping tablets and they will write you up for them. i also have bladder issues and self catheterise when needed so i took these in also, day one i was practically not out of the toilet for needing to wee but on day 2 it was different and i did start to think i may be retaining (because the infusion can trigger MS symptoms you have experienced this did not worry me) but everything returned to normal around 2 hours post transfusion. As for noticing any improvements i have not noticed anything (if anything a few symptoms are heightened) but it is early days i am not even 2 weeks post transdusion yet and there is also no guarantee that it will make improvements, the decision for me to take lemtrada was to hopefully stop the progression of the disease and i will be more than happy if it manages to do just that

Monica2015

@Monica2015

Thanks for that. Yes, v early days for you then. I'm sorry, I don't know your history but have you had major relapses for a while or just newly diagnosed and received lem early on? Did you manage to drink 3litres daily???

TracyD

@TracyD

@monica2015 Yes I managed the 3 litres of water a day, but it takes a couple of weeks to get used to the volume before you stop being in a revolving door for the bathroom. It helps if you have some tricks to make it less boring, sparkling water instead of still, with some sugar free cordial or lemon / lime juice in the water (make it a hot drink occasionally) I try to keep an even pace throughout the day so that it's not a big amount in a short space of time. The key is to get used to it before you go for the treatment :-)

Traceylou

@Traceylou

Monica i was diagnosed 6 years ago and been on a number of different DMt's none which turned out to be right for me so far, my last major relapse was end of June beginning of July this year. I tend to have around 4/5 Major relapses per year at present and a lot of mini ones, i wont take steroids unless i absolutely have to so there are times i just see it through without them i call them mini so something that lasts maybe 3/5 days, major it usually takes 3/4+ weeks to recover and i need the steroids. i drank loads during the infusions not even thinking about 3 litres, the taste of the steroids is enough to make you constantly want to drink lol i get real bad cotton mouth when on steroids also so i do tend to drink alot when on them, i took one of those little squash and go bottles in with me, they fit in your pocket, the Oasis raspberry and lemonade flavour was so refreshing and really cut through the metallic taste the steroids leave, that along with my handy murray mints to suck on made the taste not to bad lol oh other thing i had my other half bring me was fruit and some cereal i actually liked, the toast in the ward was not toast at all was coloured warm bread me and the girls got a real gunk when we went to butter it lol so i then had fruit and my own cereal and just asked for some milk.

Monica2015

@Monica2015

Thanks for that traceylou and the background info. Are you able to point me in the direction of the diet I'm supposed to follow that I have heard about, but no real details have been given. Was this given to you on the ward? Thanks, Monica

Monica2015

@Monica2015

Thanks Tracyd. How long does the lemtrada fatigue hit you for? And how long before you felt that the drug produced changes for you? Thanks, Monica

Traceylou

@Traceylou

Monica i have never heard of the Campath diet lol only thing i am aware of is that you need to wash fruit veg etc and make sure eggs etc all cooked through, try eat food rich in Iron,just need to be a little extra careful because you will be vulnerable to infections and stomach bugs etc which the latter can be cause due to cross contamination of food or food not being prepared well enough, think similar to when being pregnant your told to avoid certain foods like raw eggs etc. but no special diet was ever mentioned to me by any of the neuros or nurses. In hospital i was given the menu just like any other person and chose what i thought would taste less gross lol

TracyD

@TracyD

@Monica2015 I have not had any 'Lem-Fatigue' at all. Since treatment all I have seen it complete remission of the MS activity and the pre treatment symptoms that I had. We are all different, I'm not the exception to the norm by not having any problems with it, both the facebook groups have large numbers of people who say they were expecting it to be terrible and it simply wasn't. I work on the theory plan for the worst and hope for the best. Today is the end of week 20 since treatment and I'm still drinking my 3 litres of water every day. I still have my vitamin and mineral cocktail I take each day, I still do oxygen Therapy at least once a week and currently have no plans to stop any of it any time soon - in reality I will probably continue all of this until at least a year after treatment number 2. On the subject of 'The Campath Diet' I believe what is being discussed is the 'dietary recommendations post treatment' Post treatment it is generally advised that you follow 'The Pregnancy Diet' which most people are familiar with. A summary of this is below. There are some foods you should avoid eating during pregnancy because they could cause food poisoning, and the possible presence of bacteria, chemicals or parasites in these foods could harm your unborn baby. Cheese Avoid: •mould-ripened soft cheeses – such as brie, camembert and others with a similar rind, including goats' cheese •soft blue-veined cheeses – such as Danish blue, gorgonzola and roquefort Cheeses like this are made with mould and can contain listeria bacteria that cause listeriosis. Although an infection with listeria is rare, with a lowered immune function this is considered to be a risk Raw eggs Avoid raw or undercooked eggs and any foods that contain them, such as homemade mayonnaise. Make sure that eggs are thoroughly cooked until the whites and yolks are solid. This prevents the risk of salmonella food poisoning. Unpasteurised milk Do not drink raw (unpasteurised) milk, including unpasteurised goats’ or sheep’s milk, or any food that is made of them, such as soft goats’ cheese. If only raw or green-top milk is available, boil it first. Pâté Avoid all types of pâté, including vegetable pâtés, as they can contain listeria. Raw meat Do not eat raw or undercooked meat. Cook all meat and poultry thoroughly so there’s no trace of pink or blood. Be particularly careful with sausages and minced meat. Fish There are some types of fish you should limit, such as tuna and oily fish, and some types of fish you should avoid completely, such as shark. Also, don’t eat raw shellfish, as it can cause food poisoning. Reducing the risk of toxoplasmosis Wash fruit, vegetables and salads to remove all traces of soil, which may contain toxoplasma, a parasite that can cause toxoplasmosis. Hope this helps (Note I loosely followed this, but there is never an occasion where it is acceptable to overcook a steak :-) )

Monica2015

@Monica2015

Thanks for the detailed response! May I ask as to when you really felt/saw noticeable improvements in your symptoms pls, that were not just periods of remission? Thanks, Monica

Monica2015

@Monica2015

Also, sorry Traceyd, but when did you restart HBO, as my MS therapy centre is unable to advise on this? Thanks, M

Monica2015

@Monica2015

@traceyd, I've just read on another post re the possibility of shingles etc post lemtrada. Should I be doing something about this now as I start a week on Monday? Or is it a "suck it and see" approach I should be adopting? My neuro has certainly not mentioned any antiviral meds. I do suffer from cold sores on my nose if I'm run down, so am concerned. Particularly, as a relapse inevitably follows. Do you have any views/ suggestions pls? Many thanks, Monica

TracyD

@TracyD

@Monica2015 Gosh that's a lot of questions. I'd have to go back and check the blog, but it was about 5 weeks or so after treatment that I started noticing my symptoms lessening - it's all there in the blog if you've got time to spare :-) I started the HBOT treatments 6 weeks before my infusion start date roughly. At that time I needed 2 a week to keep myself feeling 'normal-ish' but now I only usually do one a week and can go for about 2 weeks if needed between them when I have holiday etc - the effects as the HBOT wears off are much less noticeable these days where as before I literally woke up and felt like rather than hitting the wall it fell on me and then danced a jig :-) As for the shingles thing - and coleslaws - I'm not a medical professional so don't take my advice talk to your health care team please :-) This below is my experience only and NOT advice As far as I understand shingles is what happens with what's left in your Spinal Fluid if you've had Chicken Pox - it's sort of a resurfacing of the virus in a new and unpleasant form. I've had chicken pox, but no shingles - In the USA on the Lemtrada groups there is a lot of talk of a 'shingles vaccine' but if it's here in the UK I've never been offered it. The Anti-Virals are part of the standard regime for Lemtrada for 4 weeks from the start of treatment - it's in case you have anything like coleslaws to keep them under control - I've heard of people who've been on them for a few months though so that might be extended for you. I also don't get coleslaws so I just got the usual 28 day supply and moved on :-)

Monica2015

@Monica2015

Thanks @traceyd, a lot of questions, but you answered them! Thank you.

Ahmed

@Ahmed

It was presented yesterday at ectrims that most Msers on Lemtrada are stable 5 years on!

Monica2015

@Monica2015

@ahmed, thanks for that. Do you happen to have a link at all pls? Despite 70 relapses and 11 years later, I've always been drug averse, so this is a BIG u-turn for me!! Any thing to help give me confidence would be most gratefully appreciated... Many thanks, Monica

Monica2015

@Monica2015

@ahmed, thank you very much!!

Ahmed

@Ahmed

Not only that but brain atrophy rates remains in the 'normal' range for most people on the trial, 5 years on. These results are too good to believe. http://multiple-sclerosis-research.blogspot.com/2015/10/clinicspeak-highlights-and-hot-topics.html#comment-form Remember all this works in averages. So you could be in any part of the scale. I don't like to inflate people's hope

Monica2015

@Monica2015

@ahmed, that's seriously impressive results, and obviously average suggests the possibility of higher than "average" too, which is pretty stupendous! Thank you for forwarding all the cutting edge research to me. I'm attempting to refrain from reading all possible negatives (SE's) with the treatment, which has been my sole reason for avoiding DMTs historically. So this is precisely the type of info I'm immersing myself in to justify such a major decision. Unlike many others on this forum, despite the numerous relapses, I was simply not prepared to take such major gambles, like PML, as fortunately I've been blessed with my cognitive function being relatively unimpaired. I am awe of their courage... But this drug does appear to worth taking major risks, for the first time, I believe this in my heart... Keep them coming Ahmed, and thanks again. M

Monica2015

@Monica2015

@ahmed, have you tried Lemtrada yourself, as not certain from your profile?

Ahmed

@Ahmed

@monica2015 Not yet. I have only been recently diagnosed,around 2 months ago. As of now, Lemtrada is my first option and that is what I told my Neurologist on our first appointment last week. But I am also considering taking it slowly with one of the tablet DMTs first and see how I go from there. Right now I am 70/30 respectively.

snowbeetle101

@snowbeetle101

Thanks @margarita and @tracyd - If Charing Cross would let me stay overnight would be ace though I highly doubt it. They may suggest can do it at Kings after all. I hear Silber is doing more Lemtrada referrals. I've actually been at Kings for HSCT appointment and that is all happening there for MS as well. Amazing what is going on in London once you move away from The National ;)